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22.8.15

Twelve weeks on...

Twelve weeks ago today a selfless person and family did something extraordinary for me and my family. They don't know me and probably never will know me or my family, I don't know them and will unlikely ever get to know who they were as a person but that person and their family changed my life forever, they gave me a life!

Twelve weeks doesn't really sound like a lot, it's three-ish months, but to me it feels like such a long time. Once upon a time I tried to explain to you the two kind of time zones that we live in whilst we are on the list there's the normal one where life goes at a normal speed and the 3 years when looked at from that perspective was actually not that long. You look at some things you did and you can't help but be like "was that really 3 years ago? It feels like it happened yesterday!" and then there's the List life where time is excruciatingly long, 3 years felt like 10 and you were just waiting to die. I suppose what I'm saying is I'm in a new time zone where my being ill is some kind of distant memory to me when in actual fact it was literally 12 weeks ago, how is that possible?

I'm still restricted in someways but even with those restrictions I feel like I've been living more than I ever did 12 weeks ago. It's so amazing that I can now make plans and do things and even though they may still get cancelled due to illness I don't get upset about it now because I can just reorganise it because the likelihood of me dying before I get the chance to do it now is slim. I used to get quite upset when I had to cancel things because of being ill because it seemed like my body was just one massive burden that didn't want me to do anything. The thing was you couldn't not plan things because that would be equally as depressing and you would have nothing to look forward to and if you did die then you would have spent the the end of your life just waiting for something that didn't happen. It's a hard balance to get right and one I think everyone on the list struggles with.

It's so exciting though that I get to plan things now and not be restricted or have to worry about hills or how much walking I'll have to do. I'm planning so many things with my friends a lot I can't do for a while but it excites me that I can look 3/6/12 months into the future and know that I'll still be here to do them. I really want to fit in as much as I can because although yes I have this new life it's not always guaranteed and I've always been told 5 years is the average of what you can expect after having a transplant and although I know a fair few people who have lasted much longer I also know a lot of people who didn't make it to 5 years so I'm not going to be taking my time for granted. All I know is what ever time I have I'll be taking full advantage of it. This first year is just a bit of a limbo year because you can do some stuff but you just have to be much more careful so once public transport is a thing I can do again I will be whizzing around all over the place.

You know it's weird looking back 12 weeks ago because I was SO ill and you can't help but wonder "Would I still be here right now?" The doctors were shocked at the state of my lungs and how bad they really were and I am 100% positive if that call hadn't have been the "right" call I would not have made Christmas it was just a case of how long my will power would have lasted because I can assure you guys it was really waring thin at the end there.

As amazing as it is that I can do all these wonderful things and go away and all that jazz it will always be the small things that I'm most appreciative for. Simply being able to breathe without being in pain is far more than I ever expected, being able to get changed without having to stop to catch my breathe, to walk up the street, to walk up my house stairs, to be able walk holding hands with my nephews and be able to keep up with them, these are the things I will always be most thankful for and will never take for granted. I have a niece who will never know that side of me. She will never know the kind of person I was when I was ill, she may see photos when she is older of Aunty Stacie with a tube on her face but she will never experience Stacie with PH and I think there is something quite extraordinary about that.

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I'm in my 20's and after waiting 3 years,
I underwent a heart and double lung transplant because I suffered from a illness called Pulmonary Hypertension.

This blog is where I documented that journey and will continue to document all the amazing highs and the lows post-transplant. I hope to continue to raise awareness for both PH and organ donation and I would love for you to continue to share this journey with me.